The advent of DNA analysis as a powerful tool for crime detection has led to the creation of England and Wales’s National DNA Database (NDNAD). This is one of the world’s largest databases of DNA information, storing profiles of nearly five million individuals (1). We write to raise a concern about the potential impact of this database on people with mental disorders.

The NDNAD has long been the subject of scrutiny and criticism with regards to how DNA profiles are collected and retained and from whom. This is because the current regulations on DNA profile collection mean that the NDNAD includes DNA profiles of a large number of people who have never been convicted of any crime. These DNA profiles are currently retained indefinitely. This practice, was challenged in the European Court of Human Rights who found England and Wales to be in breach of the European Convention of Human Rights. In light of this, both the current and previous UK governments have signalled their intention to enact reform but as yet there has been no change in legislation.

Some groups, including young black men, are known to be overrepresented on the database (2) and we are concerned that those with mental health problems, a vulnerable group of people, are similarly affected. This issue has been largely unexamined and there are no estimates for the number of people with mental disorders on the NDNAD. However in 2008, nine percent of mental health inpatients were admitted via the Criminal Justice system (3). Furthermore, studies of individuals in prison and on remand have concluded that mental disorder is extremely common in these populations with respective rates of 90% and 63% (4,5). It would be surprising if the population of the NDNAD were not to broadly reflect this state of affairs.

It is arguable that a person with mental health problems who has a profile on the NDNAD, despite being without criminal conviction, is not only disadvantaged but also criminalised. This is a potentially unhelpful outcome for the process of engagement and recovery. We have concerns about how some patients come to be on this database. Patients arrested as a direct result of their mental state may find themselves on the database despite being diverted into mental health services without charge. Given that police powers allow that reasonable force may be used to take a DNA sample without consent, a disturbed and oppositional patient may be injured in the process. There is also lack of any formal pathway for removal from the NDNAD, which is at present difficult to navigate.

The new UK Coalition Government has undertaken to adopt the current Scottish model whereby DNA profiles of those arrested but not convicted are retained for six years only. DNA profiles of those convicted will be kept indefinitely as before. This reform would go some way to addressing our concerns.

We would welcome a debate amongst clinicians on the issues surrounding mental health patients and the National DNA Database.

People living in London and four other strategic health authorities are currently receiving information in the post about the rollout of the NHS Summary Care Record (SCR) system. SCR is part of the NHS Care Records System, a large UK government IT project which aims for more effective sharing of patient records between NHS services. When the system is in full swing, NHS staff in Newcastle (say) will be able to access the medical records of someone requiring care whose residence and GP is in Penzance. The SCR will initially contain records of such things as medications and allergies, but may eventually become more detailed and also allow access to specialists’ letters and scans.

Controversy about this centralised system has been rumbling on for some time and before you read further I must declare my hand: I have opted out.

No record system is perfect. Whenever you meet with any NHS healthcare professional a record will be made of your interaction and, in these days of team working and shift work, this could be seen by a fairly large number of people. Equally if you are a patient on a ward, patient notes are most often not kept under lock and key and are therefore accessible to any nosey parker who happens to walk by. Patient records are currently kept locally, for example within a particular NHS trust, and are shared within NHS organisations on a ‘need to know’ basis. Most specialists who see a patient will write and inform their GP.

As with other large database projects – of which this country now has legion – the advantages of sharing information must be balanced with the possible pitfalls. The SCR’s benefits are most obvious for forgetful people who have a serious medical condition or allergy and are visiting friends out of town. This is a relatively small number of people and for the rest of us the benefits appear to be marginal. The rollout of the SCR raises serious questions around the issues of privacy, legality, effectiveness, and cost.

Privacy

In order for medical care to function effectively it is clearly absolutely essential that patients feel that their records are kept confidential. In line with this the leaflet “Changes to your health records” states that ‘anyone who has access to your records… must be directly involved in caring for you’. However this Connecting for Health document (broken link) concedes that access will also be possible, without a patient being informed, ‘in the public interest’, ‘by statute’ or by court order.

The wide access necessary for the SCR to be effective massively increases potential for snooping. This is something of which Gordon Brown and Alex Salmond may already be aware. In order to police access to the SCR all NHS staff will be issued with a chip and pin card and retrieval of any record will leave an audit trail. But this does not address unauthorized access through logged in but unattended terminals, a common occurrence, or the accidental accessing of an incorrect patient’s record as a result of partial patient identifying details. Audit trail or not, it is hard to imagine that such a vast database can be effectively policed.

Central to the concept of privacy is deciding to whom your personal details should be displayed. Inclusion in the SCR is currently ‘opt-out’. Unless you make your wishes known, as I did, your patient records will become part of the SCR by default. This use of ‘presumed consent’ presupposes that individuals are aware of the SCR’s existence; yet in pilot areas many people were not. The recent mailings do not include an opt-out form, and opting out appears to be being made deliberately difficult. GPs are for instance unable to order opt-out forms in bulk.

The BMA has called on the department of health to suspend the SCR rollout as patients are not receiving the information they need to decide if they wish to be included on the SCR. London GPs have also been unenthusiastic.

Legality

The SCR is vulnerable to legal challenge. In a 2009 report by the Joseph Rowntree Reform Trust the SCR was awarded an ‘amber light’ indicating ‘the system demonstrates significant worrying failings and may fall foul of a legal challenge’. European law requires that systems which store sensitive personal information such as medical records either have the free and informed consent of the data subject, or be based on specific legal provisions that are sufficiently narrow to make their effect foreseeable. Such provisions must also be proportionate and necessary in a democratic society. The SCR would appear to fall short of these stipulations.

There are doubts about whether it will be possible for people to have themselves removed from the SCR. The DoH has been quoted as saying that it will be impossible, on the basis of medico-legal considerations and cost, to remove someone’s record once it has been entered.

Effectiveness

I am unaware of any evidence that the SCR will dramatically improve care. For some people, making relevant medical information available to emergency medical staff may be very beneficial and for a few possibly life saving. However for the vast majority of us it will be of little or no use.

In 2005 Amanda Campbell, died from septicaemia despite having been assessed by eight doctors. During a Today programme interview Dr Eccles, medical director for Connecting for Health, mentioned her case as an example of where centralized records would have been of benefit. Whilst centralized records might have been useful this account suggests that her avoidable death was at least as much a result of the substandard medical care that she received, something outside the remit of a centralized records database. The SCR does not work abroad or even work across the whole of the UK, as Scotland has a different system. And relying on a single system means that errors can be propagated; I would not recommend that anyone leave their medical alert bracelet at home.

Cost

Originally expected to cost £2.3 billion over three years, in June 2006 the total cost of the NHS National Programme for IT was estimated by the National Audit Office to be £12.4bn over 10 years.

Links

Database State – a super report (if you happen to think this sort of thing is interesting) about the failings of UK Government IT projects

On 7 December I wrote an opinion for this site about the launch of identity cards in Manchester. I received one comment, from Joan Burton, who wrote: “It’s a cliche but a true one – if you’ve done nothing wrong you have nothing to fear.”

One of the problems about the current UK government’s overarching surveillance project has been a lack of debate, both publically and in parliament, so I welcome any engagement with these issues. I have heard the above sentiment voiced before and I address it here to provide clarification and, I hope on Ms Burton’s part, reevaluation.

Public protection from criminal activities is a key responsibility of the state but this should not allow the state whatever means it wishes in the pursuit of this goal. Governments need to keep in mind that their populations predominantly comprise law abiding citizens whose rights and wishes should be balanced against any reasonable requirements the state may have to pursue its duties. The ‘done nothing wrong/nothing to fear’ paradigm ignores any need for balancing public and private needs to the extent there is nothing that cannot be justified by its invocation. It would, for instance, endorse the enforcement of the fitting of positioning devices to everyone living in or entering the UK, something that might drastically reduce crime but at the expense of massive state intrusion.

Thinking this way ignores the need to evaluate state surveillance projects and dismisses those who object as oversensitive to individuals’ rights, or failing to see the threat that we face. The point I wished to make about ID cards is that not only are they intrusive, but they fail to meet any of their objectives, even though these objectives have changed over the years. Now, more than ever, the UK Government must be careful with its taxpayers money and, civil liberties issues aside, that project of the expense of that of the ID cards is now being promoted as first and foremost a convenient way to prove identity at the post office is of concern in itself.

Finally within ‘done nothing wrong/nothing to fear’ thinking there is a tacit assumption that governments are inherently benign and have the interests of their populations at heart. Whilst this may be broadly so for the UK it is foolish to think that this is a universal attribute of governments or that adverse change is not possible. It is a sad fact that the majority of acts of violence committed in the modern world have been visited by those in governmental power against those who are out of power. Indeed the word ‘terrorism’ actually dates from the French revolution and refers to the use of terror by governments against their own populations (1). One estimate holds that during the 20th century governments killed 7.3% of their populations. ID cards have been documented as having been assets in mass killings both recent and historical and continue to be used to target vulnerable populations.

(2018 update – sadly Forth.ie is no more. I can’t find the estimate for the % of their populations that governments killed during the 20th Century alas, but search around and you’ll find something along the same line).

On Monday, November 30, the Manchester Identity and Passport service opened its doors and began issuing the first identity cards to British subjects since 1952. (1)

Although the cards themselves are bad enough, they are perhaps the most benign aspect of the whole enterprise, the true meat of which is the National Identity Register’(2), a centralised database in which details of all those who carry the card will be held. Fifty items per individual of personal data are to be stored (3) on this database and these will include fingerprints and facial scans, with provision for further data to be added at a later date.

Although plans to make the cards themselves compulsory were dropped anyone wishing to avoid being present on the National Identity Register will, from 2011, find themselves listed if they apply for a passport. If the government is successful in rolling out identity cards across the country then this will represent a massive accumulation of personal data and an unacceptable intrusion into the private lives of UK subjects.

Yet despite its scope, since the scheme’s inception the government has failed to make a case for its introduction. The latest attempt came from Meg Hiller, the minister for identity, who, when appearing (4) on BBC Radio 4’s Today programme, suggested that a major benefits for the people of Manchester from identity cards would be that they would be able to collect parcels from post offices with greater ease and that young people would now no longer need a passport to prove their age whilst gaining entry to a nightclub.

These are extremely modest improvements to modern life for a project that the Government has forecast will cost £5.6 (5) and the LSE £10.2-19.6 (6) billion to run for ten years. Other justifications for the scheme have included the prevention of terrorism, identity theft and benefit fraud but none of these stands up to scrutiny.

Former home secretary Charles Clarke admitted (7) that identity cards would not have prevented the 2005 London attacks, and reliance on a single nominally secure form of identification could actually make identity theft more straightforward. The only clear agenda satisfied is the current Labour paradigm whereby any problem that might conceivably be solved by a massive and costly database should be so. As well as a nascent identity card scheme, the UK also has the world’s largest DNA database and ContactPoint holds details of every child in the UK under the age of 18.

With the current national deficit nothing short of astronomic (8) there was hope that the identity card scheme would be quietly dropped. It is unnecessary and costly and threatens the civil liberties of UK subjects. It has also been so beset by setbacks (9) that were it a private sector project it undoubtedly have been canned some time ago. Indeed, if the next administration is led by any party other than Labour it will be – the Conservative and Liberal Democrat parties have both said they will scrap it. But our floundering government would rather push ahead with this costly, invasive and useless idea than consider the taxpayer, never mind come to their senses and start to trust the public.
(1) For two different views on Manchester’s first day see: ID cards now available. Count me out, Dave Page, the Guardian, November 30, 2009 and Angela Epstein, the UK’s first ID card holder, Angela Epstein, Jewish Chronicle, December 3, 2009
(2) Overseas identity card schemes do have an accompanying database and are not comparable
(3) As specified by the Identity Card Act, 2006 See: http://www.opsi.gov.uk/acts/acts2006/ukpga_20060015_en_1#3
(4) Today programme, BBC, Monday 16th November
(5) ID card scheme ‘to cost £5.6bn’, BBC News, November 8, 2007
(6) See: The LSE Identity Project Report (PDF), London School of Economics and Political Science, 2005
(7) ID cards ‘wouldn’t stop attacks’, BBC News, July 8, 2005
(8) Bank bailout cost hits £850 bln, Kistin Ridley, Reuters, December 4, 2009
(9) See ID cards: Seven years of missed deadlines and U-turns, Nick Heath, Silicon.com, December 2, 2009 (now unavailable)

***

nb: this article first published on Forth.ie where someone commented:

‘It’s a cliche but a true one – if you’ve done nothing wrong you have nothing to fear’

Before you settle into this state of mind, ask yourself this question – what is not justified by this line of reasoning? Then listen to this song. Fundamental on Amazon

In Kafka’s The Trial (buy Amazon), published in 1925 Joseph K, a bank clerk, is unexpectedly arrested by two unidentified people for an unspecified crime. Although the novel was never finished (and Kafka actually wished it destroyed) in what exists K spends his time trying to navigate a legal system which is at once ubiquitous, immensely powerful and totally lacking in transparency.

This novel comes to mind whenever I think about control orders, which were introduced by the British Government in the Prevention of Terrorism act in 2005 in response to the House of Lord’s ruling against indefinite detention without charge or trial for foreign nationals contained in the Anti-terrorism Crime and Security Act 2001.

Control orders enable the Home Secretary to impose an unlimited range of restrictions on any person he or she suspects of involvement in terrorism. Among the restrictions that can be imposed are curfews of up to 16 hours enforced by an electronic tag, restrictions on the use of mobile phones and the internet, vetting of all visitors and meetings and restrictions on an individual’s movements. The Home Secretary also has the power to add new restrictions or obligations as he sees fit. Based on suspicion and secret intelligence, those subject to an order do not know the accusation or case against them and are powerless to dispute it or show their innocence.

Legislation which severely curtails personal liberty in this way, which can be enacted on the basis of vague criteria, and which has inadequate oversight is more than just concerning. The legality of control orders is currently being tested in the High Court following a critical House of Lord’s judgment in which Lord Hope said:

…a denunciation on grounds that are not disclosed is the stuff of nightmares. The rule of law in a democratic society does not tolerate such behaviour. The fundamental principle is that everyone is entitled to the disclosure of sufficient material to enable him to answer effectively the case that is made against him.

The Liberty 75 conference was attended recently myself and, more notably, Mahmoud Abu Rideh who has been subject to a control order for the past four years. Prior to this he was interned for three and and a half years without trial. Mr Abu Rideh must comply with a regime of telephone reporting three times every 24 hours; daily reporting in person to a police station; a 12-hour daily curfew and meetings outside the house and visits to anyone in the house prohibited except for persons cleared by the Home Office.

Mr Abu Rideh’s mental health appears to be severely compromised by his situation and he has made several suicide attempts and at one point was on hunger strike. And control order do not only affect the person to whom they are subject as their families suffer alongside their subject, as this article explains.

The civil liberty pressure group Liberty are campaigning against control orders and their director, Shami Chakrabarti has said:

As stupid as they are cruel, control orders are the worst hangover from Britain’s War on Terror. No real terrorist is ever going to comply with house arrest and a large number of suspects have disappeared. But an innocent person can be subject to indefinite and severe punishment without ever having been charged or brought to trial.

I agree; the UK Government should show its hand and prosecute any persons who it is currently subjecting to a control order as anything else is cruel and degrading. I am not aware of any representation having been made on behalf of doctors on this issue but there is a policy (broken link) adopted in 2003 by the World Medical Association that suggests we should be heard. It states that there is an:

..ethical obligation on physicians to report or denounce acts of torture or cruel, inhuman or degrading treatment of which they are aware.

The Metropolitan Police have launched a new poster campaign clearly pitched to engender paranoia and anxiety in London’s population. A picture shows a wheelie-bin brimming with carelessly discarded toxic chemical containers accompanied by the smug caption:

‘These chemicals won’t be used in a bomb because a neighbour reported the dumped containers’

At the edge of the shot – to remind us what is at stake – a mother and child approach, totally unaware that such danger lurks in their community.

The scenario is clearly simplistic, as well as being inconsistent with previous government statements. Are these terrorists, so overcome by fanatical zeal they find themselves unable to dispose of incriminating evidence with necessary care, the same terrorists whose plots are so devilishly complicated that investigators supposedly needed 42 days to unravel their schemes?

For several years now, the Government and security services have been feeding us information about the ever-present threat to us from international terrorism in the shape of Al-Qaeda. Al-Qaeda is apparently well financed, well organised and poised to strike at the heart of our freedoms. The danger is so serious that it necessarily requires a government and security force with increasingly wide ranging powers to defeat it. But their threat has also not materialised, and in 2005 the only significant attack on UK soil has not been successfully linked to them. So, with international terrorist attacks increasingly appearing largely a fantasy, and in the face of civil liberties protests against draconian and frequently misused police powers, the Met’s posters are more about maintaining the police’s might and authority by reiterating the precariousness of our security, and the necessary evil of strong policing, than about catching terrorists (such as they do exist) per se.

Appealing to our wish for security is a technique at which politicians are already well practised. The Government’s assessment of the current terrorist threat, made available in the name of keeping us informed, is ‘severe’. This ‘threat level’ has been published since August 2006 and has since been either ‘severe’ (terrorist attack highly likely) or ‘critical’ (terrorist attack imminent) ever since. With such an apparently unwavering crisis, one is reminded of the plot of 1984 wherein a state of perpetual war was used to justify the control of Oceania by Stalinist methods. Constant news of inevitable attacks feeds the assertion that threats are all around us and can only be tackled by strong government, whose actions are all ultimately in the common good. Furthermore, having over-exaggerated the security risk, continued absence of any attacks serves to strengthen their point, and ‘prove’ the success of their policies.

The social divisiveness of all this, and especially the current campaign, need hardly be pointed out. Given that it’s almost impossible to differentiate between a man wearing a rucksack full of books and a similar man with a rucksack full of explosive there will inevitably be a large number of people falsely detained following the actions of well meaning, but ultimately misguided amateur anti-terrorist sleuths. It pays to do a little maths; imagine that there are 8 million people in London and that amongst their number there are 150 ‘terrorists’. We know from this poster campaign that every member of the public is under suspicion. Let us suppose that the intuition displayed by members of the public in spying on our neighbours with the aim of catching terrorists is correct an incredible 99.99% of the time. Since our ‘test’ is very sensitive, our 150 terrorists are successfully caught, but it still gives a false positive rate of 0.01% which means that 80 000 people will be wrongly identified and possibly victimized. Such simple calculations and the collateral damage they imply appear to have been entirely overlooked.

The Police and Government have a duty not to engender panic as a way of achieving their own ends. Many people find modern life distressing enough without having to feel that they must be constantly on the look out for terrorist cells; the psychological health of society at large should be considered before the use of alarmist campaigns. Successful society relies on mutual trust and widespread suspicion encouraged by this campaign is more akin to that seen in communist East Germany than to 21st century Britain.

It’s not important to most people that my paper 3 MRCPsych results came out on Monday last, alongside the snow. Unremarkably, the pass list was first published on the internet before individual letters were sent in the post; despite passing, my name wasn’t on that list. When I’ve explained to people that I opted for my results to remain private, most of them have wondered why. It seems to me that as individuals we’re expecting to have less and less control over what information is available about us.

Technology has changed a lot even in my lifetime. I’m old enough to remember the days before the world wide web and mobile phones, although it’s becoming harder and harder to believe that that time ever existed. I can actually recall the first time I tried to access a website; it didn’t load properly and I thought it was rather dull (I’m not a visionary). You don’t need me to tell you the opportunities that the world wide web has brought. But we’re still weighing up one of the major disadvantages of the new information technologies: the increasing ability of government and private organisations to capture and share enormous amounts of data concerning private citizens or ‘us’.

Most of us don’t seem to care too much, but I object to these invasions of my privacy. I don’t see why anyone should know my exam results apart from me and those people I might wish to tell. Equally plans which will require me to possess an identity card, not just a piece of plastic but backed up by a personal information database, to enable me to walk the streets are sinister and odious. Furthermore, the UK population is watched by four million CCTV cameras and 7.9% of the population is on the national DNA database despite an EU ruling that holding the genetic data of those never having been charged with a crime was unlawful. There are also proposals for a ‘superdatabase’ of citizens’ emails and mobile phone calls. Clause 152 of the current Coroners and Justice Bill will allow government departments very broad powers to share personal information. The plans for NHS records could mean that your notes could be read by over one million people (see below)

Of course I can’t say that this datasharing is without benefits. We must all give up a reasonable amount of our privacy to enable to fight against crime and to allow us to move smoothly through the days in a complex society. What I say is that the balance is wrong and that our data is being collected to deal with vague and insubstantial threats and/or ruthlessly mined by poorly regulated commercial organisations whose intentions are unclear. Either way we are being carelessly treated and the UK is sleepwalking into a surveillance nightmare where privacy is seriously compromised.

“The huge rise in surveillance and data collection by the state and other organisations risks undermining the long-standing traditions of privacy and individual freedom which are vital for democracy.

If the public are to trust that information about them is not being improperly used there should be much more openness about what data is collected, by whom and how it is used.”

Privacy is a precondition to a life of quality and also at the root of freedom. I think it’s important to fight back where one can. The Government has a plan to make all NHS patient records part of a nation wide ‘spine’, where potentially every NHS employee, of which there are over a million, could access your records. The Big Opt Out website tells you how to remove yourself.

At the end of this month The Convention on Modern Liberty is being held. No2id are an organisation campaigning against ID cards. Here they tell you why ID cards should concern everyone who lives in the UK.

I would normally shy away from committing to print any feelings I may have on the Israeli-Palestine conflict, as feelings run high and the issue is thorny. But today the death toll is reported to exceed 1000 and the UN relief headquarters has been bombed (described by British PM Gordon Brown as ‘indefensible’).

On January 9th this letter was published in the Lancet which finishes:

This report is for our colleagues around the world who might be unaware of the deliberate erosion of human rights in both the West Bank and Gaza. We suggest that, in view of the failure of other measures to influence those in power, serious consideration be given to targeted academic and trade boycotts.